June 2013 Health Update

As many of you know, but some may not, I spent the past week in St. Louis at Barnes Jewish Hospital completing four days of testing for a potential lung transplant. While I began this journey a couple years ago at Cleveland Clinic, they are not a network provider for transplant services with Humana. We still have a grievance pending with Humana and Cleveland Clinic, but decided to keep things moving forward at Barnes (which is also a high volume, top-tier center for lung transplant).

Hanging out with Daddy at the playground outside Barnes.

The week felt a little like “transplant camp” as Eileen and I went from meeting to meeting and test to test over the course of four days. Some of the tests included a chest x-ray, chest CT scan, nuclear medicine imaging for lung and heart function, pulmonary function tests, blood/lab work and a cardiac catheterization. We met with a transplant physician, nurse, social worker, financial counselor, pharmacist, respiratory therapists and dietitian. One of the most informative sessions was with a trio of lung transplant recipient mentors who were eight to ten years out from their own transplants.

After all of the tests and meetings we had a final assessment meeting on Thursday afternoon with the transplant pulmonologist and nurse. The short summary is that Barnes will list me for a lung transplant whenever I am ready to be listed. Of course that process and decision isn’t so easy and there are numerous reasons to delay transplant as long as possible. Among the most compelling reasons to wait are the survival rates after lung transplant. Almost everyone survives a year (90%), but only 75% make it three years. You can flip a coin at five years. One in four will live for another ten years and the current data is that maybe one tenth of transplant recipients will see a second full decade after transplant. (Personally, I intend to set the living recipient record some thirty or forty years from now). In any case, we do need to discern the balance and tipping point when my quality of life without transplant is worse off than the risks, side-effects, and duration of life afterwards. I’m not sure that I’m quite there yet and just pray for the wisdom to know when I am.

In the meantime we wait. We know that in order for things to get better they have to get worse (and even that “better” doesn’t come without risks and inevitable complications). I seek some quality in the life I currently live. This means I need to be better about exercising, better about using oxygen, and better at setting limits – even if I hate every minute of it. It also means accepting the help and support that is contrary to my nature.

To that end, people continue to ask and ask what they can do with and for us. I imagine this will be an evolving process and answer. Here are a few things to start:

1. Register to be an organ donor by visiting: www.donatelife.net/register-now/.

I don’t personally want your lungs and if you offer them you’ll be in line behind my mother-in-law who has offered a couple of her lobes already. (A living donor is not actually an option in my case). We’ll try not to dwell on it, but the stark reality is that many people don’t survive the transplant waiting list for lack of donors. Please consider giving someone else the gift of life when yours should come to its end (and tell your loved ones of your wishes).

2. Please continue your prayers, mindfulness and spiritual exercises.

My donor has been at the forefront of my mind lately. Our lives are on parallel paths destined to intersect at some unknown moment in the future. I pray that his or her life be lived full of purpose, love, joy, compassion and fulfillment. I hope that he or she is cherished by those around them today as much as I will appreciate them and their selflessness on that unknown tomorrow. Please be mindful of them along with me.

Likewise, please pray for our family as we discern the inspiration to know when it is time to be listed. We’ll need wisdom and clarity interpreting the signs in dark times with only the faint glimmer of a hope-filled, future light to lead us forward.

Finally, do raise up our team of healing professionals. They have been empowered to perform modern miracles and their gifts are truly blessing.

3. The years before, during and after transplant will be expensive for us. Semiannual evaluations beforehand, the procedure itself, and lifelong immunosuppressant medications mean we’ll always have to meet our annual out-of-pocket deductible. Add to that the costs of travel and eventual relocation (maybe) once listed. I consider it a blessing that Eileen and I are able to continue working for the time-being, but that may not be the case at some point.

We are investigating a couple of avenues for fundraising. One will likely be an account through a 501(c)(3) non-profit for transplant like HelpHOPELive or the National Foundation for Transplant. This option can be tax-deductible and employee-matched for donors, but limits our use of funds for specific medical-related purposes. The other option will be an unrestricted savings account with our bank. (Those donations wouldn’t be tax deductible, but they would allow us to use funds at our discretion for other expenses). Neither of these funds has been created yet, but we will keep you posted when they are.

4. We certainly appreciate gifts in kind or of service. All the same, we do want to maintain some level of empowerment to do and provide for ourselves. If you’d like to bring us something, do something, or spend time with Adah and Eamon, that’s great. Please do offer us the autonomy to decide if and what we need and when. We will work on some mechanisms for seeking and scheduling help as that becomes more and more of a reality.

One important aspect of the transplant evaluation is an assessment of a recipient’s support network. Believe it or not this was a very challenging question because we have so many people supporting us. Between family, friends (from Cincinnati, St. Louis and elsewhere), neighbors, co-workers at TriHealth, Group Health and Mount St. Joseph, my Mount students and alumni, the St. Clare Church community, and others, I’m sure we forgot to mention some of you during that part of the interview.

Regardless, I’m pretty sure we earned a perfect score for that question and we appreciate each and every one of you that supports us.

Sincerely,

Pete, Eileen, Adah and Eamon